Wednesday, October 6, 2010

Well no improvement on me updating more often. I seem to only update about every 2-3 months, so getting everything in one post is kind of difficult. Anyways, Bryleigh is still doing well and accomplishing new things every day. She is walking very well now and even trying to run. She has not got the running down to well because she normally ends up falling down, but she gets so excited and her eyes get so big when she “takes off”, it’s so cute. Yesterday Tyler was acting like karate kid and kicking his leg out saying haa-yaa (however it’s spelled) and Bryleigh started imitating and making the haa-yaa noise. She has been really good at imitating things lately. It is so fun watching her learn new things. Her vocabulary consists of a lot of words now days. Her favorite word is still “momma”. Every morning before she even sits up in her bed she is calling for “momma”. It’s the sweetest thing. Bryleigh had always slept in our room but when we moved in August she finally got her own room. I had a hard time at first but we have adjusted. Well I have adjusted, Bryleigh did not seem to be bothered by the change at all. I did have to get a video monitor so I could see her at all times. She is a very bossy little girl and will scream at someone who does something she does not like. We have started to discipline her but she does not seem to be responding very well. I am sure consistency will pay off eventually. In July Bryleigh was diagnosed with dysphagia. It is not a very bad case but it is still something that needs to be managed. We are putting a packet of Simply Thick in her cups. We have kind of skipped the whole sippy- cup thing and went straight to straws. She does not get choked up near as much when using a straw. One of the therapists recommend Vital-Stim Therapy. ECI does not provide this service so I had to find a home healthcare company who did. We had an evaluation with them and they tried the therapy on her and she did not like it at all. They got through about a minute of it and ended up stopping. Her developmental doctor did not end up signing off on it and her neurologist was not very supportive of it either. Bryleigh’s brain did not form correctly in all areas. The area that affects her swallowing is one of them. They said the Vital-Stim would not be beneficial to her because it would not “fix” the damaged area of her brain. So for right now I am going to hold off on pursuing it, but may look more into when she is older and will tolerate. It is said to not be painful, and every doctor has their theory on things and some of them seem to think it could help her. I have heard quite a few success stories with it too. For now we are just doing speech/feeding therapy. In August she had 4 absence seizures. They lasted for about 3-5 minutes each. She did not have any difficulty breathing during them so we did not have to take her to the hospital. Her neurologist had us up her dosage of Trileptal. We met with him in September and he told us that the children with polymicrogyria are sometimes the hardest patients to get their seizures under under-control. For now I do not worry too much because she does not have them very often. I pray that it stays this way. Bryleigh’s developmental doctor suggested that we take her for a hearing test just to rule any hearing problems out. We took her to a place where they tried the standard hearing test and she did not cooperate very well. She would not look at the direction of the noises and we were not sure if she was just busy playing and did not want to, or if she really didn’t hear it. They also put these things (sorry I don’t know much about this) in here ear to measure how her ear drum responded and they said her left ear did not respond well. Again, they said that it could be that she was moving so much it could not be accurately tested. Since the test was inconclusive, we are going to have an ABR test done. Not updating for 3 months causes my posts to be very long so I apologize for the novel  I am updating from work so I do not have many current pictures. The only ones I have are from my phone and they are not the greatest quality. With my rate of updating I will not be heard from until Christmas time! Wow this year has flown by! I will try for sooner. Maybe Thanksgiving!

Her sweet little smileRunning at the doctor's officeWalking to the houseColor time with Bubba

About Me

Bryleigh is a beautiful little princess who was diagnosed with congenital hydrocephalus, an encephalocele, absent septum pellucidum, and thinned corpus callosum. She has had two surgeries and is doing awesome! We are so thankful and proud of her! We welcome everyone to read about her journey!